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Confusingness

Hi guys, sorry i haven't been on for ages, just been stupidly busy balancing university work and being ill lots!

Anyways, I went to the hospital today, I've moved hospitals as I live in Manchester now and its hard for me to get to my hospital back home.

I spoke to the Dr and had to go through all my symptons, and I know this sounds silly but its as if he was doubting me.

Lately I've been in SO much pain, in my legs, arms, back, hands, fingers. Both joints and muscles. I told him this, and told him its at the point where I cant leave the house a few days a week, my bf's having to cook for me etc etc. However, he didn't seem to have any view on this. He asked me if my joints were swollen and I said no but told him tht my knees and knuckles go red when im ill (which you think would be inflammation). Also I told him it hurt when he touched my ankles n calves, and biceps. Also told him my fatigues getting worse (which it is, its unbearable!!!)

He then asked me if i have any rashes, and I said about how i get red cheeks that are sore (like the butterfly rash) but he also just seemed to dismiss that.

I don't know if its me being paranoid, or if its cus he's knew and im not used to his style (if ya get me). I mean he still put on my documents that I have lupus, so maybe its just because he can't do anything yet?

He sent me for lots of blood tests, cause he mentioned something about how i've not had organ involvement which is strange, but tbh i've only had it for just over a year?!

Anyway im just confused and miserable cause im constantly in pain and have exams coming up. What do you guys think?

Hi yea, he's a Rheumatologist. I'd had the same one for nearly 3 years but due to moving I had to leave that Dr, and he seemed to graps my situation and saw how it had worsened. I'm currently on 400mg of plaquenil and they have helped, its just lately it's been getting worse. Also have lanzaprozole for my stomach inflammation/pain.

I'll see how things go, it's diifficult to get another one though as I'm in the UK and have to be referred to a new doctor i think. I mean he's kept all my meds goin, and was writing on my notes about having lupus because all my blood tests my old rheumy sent suggest it.

I think its just like you (nonna) said, tht new docs are sceptical. It's just annoying because as im sure you know, with lupus you always feel people are being sceptical

Sounds like your symptoms are a lot like mine.. I haven't had any organ involvement that they can find thus far.. and at that, my labs are really vague when it comes to pointing to lupus anyway. And yes, initially when I first saw my rheumy, I thought he was humoring me the entire time and was gonna tell me it was all in my head, but since I've been seeing him and he's witnessed some of my worse times and been able to also witness the improvement I've made on the plaquenil, he's more comfortable with the lupus Dx (even though it is ANA-negative lupus)..

Give it some time, he's probably just trying to be thorough at first and look from every possible angle for you, looking for things perhaps others have overlooked before and that is a sign of a good doc. There's a process, and he probably just wants to verify what's already in your records so he can wrap his head around your case.

PS, I hope you start feeling better soon, my fatigue has been HORRIBLE the past few weeks and that seems to make the join/muscle pain even worse, so I'm in the same boat.

ShannonDivorcedRegistered NurseProud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.

Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

God, grant me the serenity to accept the things I cannot change...
The courage to change the things I can...
And the wisdom to know the difference.